Arterial TOS with RSD
 

This chronic pain is really getting me down. Does anyone else suffer with both conditions? I have had RSD for years on the left side and now in the past eight months, it has decided to take up residence in the right limb. I could not figure out why I was having so much warmth and sweating in my hand from TOS until several different doctors have said it looks like RSD/CRPS to them. It was very evident during my EMG when the doctor had to stop several times to dry my hand and arm from sweat. I had this on the opposite arm for years then it settled.

They tell me it is from the TOS most likely and that a surgery is now very high risk due to RSD spreading. What is a person to do?

Hi ElyseHart
 

I do know what you are experiencing. I have a bad ankle condition, the foot broke down, arch, tendon tears, achilles problems etc. I have RSD or PN on top of this structural problem. I was just advised not to do the surgery to correct my ankle, which I had gone for a second opinion for it. Now I limp around, and there is no help for it. The ortho doc. said not to do an incision on a limb that has RSD, as you could wind up with greater pain. This is what happened to me. I suppose each patient is different. I take pain killers, and I suppose now, that is going to be the best I can do to help myself. Its lousy, no doubt about that, and I am sorry you have TOS, with the RSD. Have you gone for consult about it? What are your doctors telling you to do or not to do? Keep in touch. I will keep you in my thoughts and prayers. ginnie:hug:

Thanks ginnie. Doctors are not agreeing at all right now. My vascular surgeon wants me to have breast reduction in hopes of calming the strain on the TOS area. My neurologist says no way with RSD in the picture. My neurologist, vascular surgeon, doctor who did the EMG and a hand surgeon I consulted for possible carpal tunnel all independently stated I had RSD symptoms on the TOS side. My primary doctor is not certain it is RSD because I do not guard it in any way. He thinks it is pain from TOS.

At times it feels like RSD except I can touch my arm and neck and in fact touching feels good. It distracts me from the pain. That was not the case on the left side. I could not even let a shirt touch that side for over a year. So I don't know. Just in lots of pain and very little sleep. I just have not seen anyone write that their TOS side gets warm. My hand will get so much hotter than my left side, it is weird, which is typical for RSD.

Hi ElyseHart
 

[It is very hard to make any decisions when your doctors do not agree. My PCP and orthor surgeon do not agree either. Sorry you are going through this as I do know just having TOS is difficult. I will keep you in my thoughts and prayers. ginnie

i suffer the same as you do have they done a bone scan to confirm your rsd

No, I have not had a bone scan. My pain management doctor asked if I wanted one back in May, but I decided to wait because it involved a needle stick. I have been nervous about getting needle sticks since my first RSD diagnosis. Maybe I should get the test. Does it confirm RSD?

does one need a bone scan for a true diagnosis of RSD?CRPS?

help
 

can anybody out there hear me? I'm lookin for a chat room about CRPS.

It is just a test to confirm rsd as your bones will actually change if you have rsd as it was for me, I also have vascular and nerve to as well as a very winged scapula all do to my employer not fixing a commercial freezer door which yanked my arm and shoulder out of place that. Was 3 years ago and I still cannot work